There is a lot of excitement in the health service about self-care and patient activation. Patient activation is the field of trying to help and encourage people with long term health conditions to be more active in understanding and managing their health. There is a patient activation measurement (PAM) system which tracks the extent to which people are taking responsibility for their own health, managing medication and ‘self-caring’, rather than relying on medical professionals. ‘Activated patients’ are likely to be living more healthily and experiencing fewer health crises.
Patient activation is an unfortunate term for a potentially useful idea. If you start by thinking about people with long term support needs as patients, who need to be activated by doctors, you’ve already lost. This is borne out of the kind of thinking that talks about whether you take the medication your doctor wants you to take as ‘compliance’ and ‘non-compliance’. It sounds like it’s about taking personal responsibility for our own health, which we should all do, but it is yet to escape its roots in ideas of responsibility which are defined by the medical profession: to do what the experts tell you, so that you can reduce your risks of avoidable hospital admission and ultimately cost the NHS less money.
People who get this agenda acknowledge that the terminology is not helpful. So what would be more helpful formulation of this agenda? As always, we need to apply an assets focus to this question. An assets focus assumes that people have expertise in their own lives and looks for what they can or could do, not just what they need and can’t do. It requires looking through person’s eyes and those of people closest to them, not through a professional or service lens.
Looked at through these lenses, an individual with a long term condition is not primarily a patient: they are living their lives – sometimes their whole lives – alongside the condition, and whilst no one wants to use emergency and medical services more than necessary, that is unlikely to be anyone’s number one goal in life. So patient activation is actually about what in social care has for years been called choice, control and independent living.
At a deeper level, it is about supporting people with long term conditions to live well. The key NHS contribution to that will be about supporting their health and wellbeing, but this will only translate into living well when the system as a whole (health, care, housing, the voluntary/community/social enterprise sector) is designed around informing, empowering and connecting. We need to recognise that what we are measuring is both the positive and negative impact of service interventions on the strength and capability of the individual and their families. So if we want to avoid this becoming another failed attempt by services to fix us, we need to reframe the PAM in several key ways:
- A rebrand. Yes, it’s only words, but to help get us all thinking differently, let’s call it something like the Empowerment Measure or the Wellbeing Support Measure. Or a better idea which please do suggest in a comment below!
- This would be a twin measure of both the positive and negative impact of interventions: to what extent to interventions result in people actively managing their own conditions, plus to what extent to interventions undermine key elements of wellbeing, including confidence, resilience to crisis and connections to others. The differential between those two measures will say something powerful about the person’s overall wellbeing, which is what matters most to them, and should therefore matter most to those paid to support them.
- The connection test is key here. There’s no point in measuring the activation of individuals, whilst ignoring the activation of any family carers they have, particularly where, as is the case for over a million families, those carers are full time (and above!).
That suggests some extra complexity: a measure of the extent to which our interventions (not just health but the same measure used for the combined impact of all the services in play) empower and disempower the individual, and the same kind measure offered to any family carers. But that approach would get us closer to the overall impact of what is supposed to be an integrated system and it would look at the impact upon the person as they saw themselves: either as an individual, or as part of a couple or family unit. So you might find that the individual feels well informed about their medical treatment, but gaps in social care or housing negate those benefits. Or that the individual feels confident but their family carer, who is the lynchpin of their care and support, feels shut out and disempowered in a way which puts the sustainability of the person living independently at risk.
This approach would feel very different to a PAM: measuring the success of the partnership between individual/family and support services and the extent to which they were effectively sharing responsibility and resources, not simply whether patients were doing as doctor says.
Escaping the invisible asylum 